CDCN’s co-founder, Dr. Fajgenbaum, recently completed a powerful memoir about his journey from being a medical
student and former college athlete to becoming a patient with a rare disease who spearheaded the search for a cure as a physician and researcher—and became a champion for a new approach to medical research.
Dr. Fajgenbaum wrote the book to raise awareness and funds for the Castleman disease fight, inspire readers to fight back when they’re up against the ropes and to turn their hopes into action, and highlight the CDCN’s unique approach to advancing rare disease research and how there are 1500 drugs already FDA-approved for one disease that may be a treatment or cure for the 7,000 diseases without any–like how the kidney transplant drug Dr. Fajgenbaum is on is saving his life. How many drugs already exist that are cures for diseases that we just don’t know about?
Purchase a copy everywhere books are sold and through Amazon: bit.ly/chasingmycure
Learn more: chasingmycure.com
“An extraordinary memoir . . . It belongs with Atul Gawande’s writings and When Breath Becomes Air.”
—Adam Grant, New York Times bestselling author of Originals
David Fajgenbaum was a former Georgetown quarterback nicknamed the Beast in medical school, where he was also known for his unmatched mental stamina. But things changed dramatically when he began suffering from inexplicable fatigue. In a matter of weeks, his organs were failing and he was read his last rites. Doctors were baffled by his condition, which they had yet to even diagnose. Floating in and out of consciousness, Fajgenbaum prayed for the equivalent of a game day overtime: a second chance.
Miraculously, Fajgenbaum survived—only to endure repeated near-death relapses from what would eventually be identified as a form of Castleman disease, an extremely deadly and rare condition that acts like a cross between cancer and an autoimmune disorder. When he relapsed while on the only drug in development and realized that the medical community was unlikely to make progress in time to save his life, Fajgenbaum turned his desperate hope for a cure into concrete action: Between hospitalizations he studied his own charts and tested his own blood samples, looking for clues that could unlock a new treatment.
With the help of family, friends, and mentors, he also reached out to other Castleman disease patients and physicians, and eventually came up with an ambitious plan to crowdsource the most promising research questions and recruit world-class researchers to tackle them. Instead of waiting for the scientific stars to align, he would attempt to align them himself.
More than five years later and now married to his college sweetheart, Fajgenbaum has seen his hard work pay off: A treatment that he identified has induced a tentative remission and his novel approach to collaborative scientific inquiry has become a blueprint for advancing rare disease research. His incredible story demonstrates the potency of hope, and what can happen when the forces of determination, love, family, faith, and serendipity collide.
“A page-turning chronicle of living, nearly dying, and discovering what it really means to be invincible in hope.”
—Angela Duckworth, #1 New York Times bestselling author of Grit